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you can be heard in an open forum on topics that are important to you. You’ll find hope, insight, answers, and the awareness that if you are suffering from lupus, you are not alone. We invite you to share your own story and take part in the discussion.
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I don't want to be scared all the time. Of everything. Ever since being in the hospital in December, EVERYTHING scares me. I'm scared that something is going to happen to me. When they first told me I had Lupus, my first thought was, "Am I [more]Read more
It is so critical that others are well informed of the dangers of not diagnosing early. In reading the forums I see every day that women cry out to the doctor after researching their own symptoms for Lupus diagnosis. It takes so long to confirm. [more]Read more
Today it was scorching hot outside. Index was something like 97. My grand daughter visited today and wanted me to watch her ride her little scooter. So, I stepped out on the porch to watch (under the roof and not in direct sunlight). The few [more]Read more
Had another doctor's appointment today. This time to the eye doctor. I'm on plaquenil which requires a test called a visual field to be done every 6 months to make sure the medication isn't affecting my eyes. I've been on this medication for a [more]Read more
I am a 34 year old African American female. I have SLE, which I was first diagnosed in December 1995 after I went to the doctor for a mysterious rash (butterfly-rash) on my face accompanied by fatigue. At first the doctors thought the rash was [more]Read more
I often find myself asking which is worse the joint pain or the Fatigue. Today I'd have to say the fatigue. My daily routine consist of work (secretary) and an hour lunch / nap from 12 - 1pm . This seems to really help me make it til 5pm.Read more
I am Praying that none of my 3 Children inherit this horrible debilitating disease from me! That would be the worst thing that could possibly happen to me! I know my Mom felt guilty because before she passed away from Lupus she knew I had it, [more]Read more
Today marks exactly three years from when I had my first flare. I was so sick that I ended up in the hospital for 9 days. I can't exactly remember everything that happened then (probably because of the morphine), but I do know that I was actually [more]Read more
I am a 46 year old female working full time and residing in Massachusetts. Approximately 8 years ago, I developed a strange looking rash covering my chest and neck. I ignored the rash and calculated on my own that the cause was sun exposure in [more]Read more
I'm not sure I believe the Insurance company.Rheumatologist isn't sure.So I'm not sure.More self doubt.Now I don't have Insurance.Once you are in the system as being denied Insurance is very difficult to get.Read more
There are days when I so wish I could enjoy the sun, when I could go to the waterpark with my kids, stay the whole day, and have no problems whatsoever. Today is going to be 109 degrees in paradise. Or should I say in hell. I woke up in the [more]Read more
I'm betting I began feeling the effects of lupus before I turned 40, but I have no proof, and the doctors, who of course know all, say that's probably not true! For me, Lupus hasn't affected any of my major organs (PRAISE GOD). What it has done [more]Read more
Until I became ill, I worked for a government agency and I thought I knew paperwork. I was wrong. FMLA, Short Term Disability, Long Term Disability, Social Security Disability, AHCCCS, Food Assistance, Chapter 7 Bankruptcy, are all familiar to [more]Read more
I was officially diagnosed with SLE last November. I am 60 years old, the diagnosis explained a lot of what had been happening in my body for the past 20 years.Read more
I am now 61 years old and I was diagnosed with lupus in Jan. of 2006. My beginning symptoms started in April of 2000, I think. At that time I began having mild fatigue, which was new to me. As I said in my previous entry, I have always been [more]Read more